Lumbar puncture - the most painful experience of my life!

Hi everyone

I am new on here and thought it would be useful for me to gain advice from the experts!

I have been undergoing tests for MS for the last two years following a loss of feeling in my right hand side (my thigh and my right arm mainly) which then went on to be tingling and numbness or tiny electrical pulses which would move up and down my arm. I have had 3 MRI's now and all these have shown are wear and tear on my spine/discs, worse around my neck. I also had a CT scan which was clear and electro-sensitivity tests done at the Oxford Radcliffe which were also clear.

Finally, I was told I would need a lumbar puncture to see if this would give any consise diagnosis. I went in on a Wednesday and was told by the Dr performing the procedure that he had just done one without a local anesthetic and the patient only felt mild discomfort and so he would do the same with me. His comment was 'why have two needles when you can have one'. I did tell him that I had a painful epidural with my last baby but he said that a lumbar puncture was a lot less painful. So I prepared myself for just 'mild discomfort' taking his word for it. The next half an hour (and since then) has been like a nightmare.

As soon as the needle went into my back I felt such unbelievable pain that I was screaming in agony. He continued to dig around trying to get the CSF to come out and this went on for about 10 minutes with no result. The pressure was 1 when this was happening. My husband was holding my hand and he could see the look of terror on my face as it was happening. On a pain scale of 1-10 this was a 100!!! The Dr kept repeating that this had never happened before and he would have to try again, at this point my huband told him that he had to give me a local and I was sobbing. I had two nurses holding me down and telling me not to swear as I was in an open ward.

I was given a local anesthetic and then another lumbar puncture and once again he couldn't get any fluid and the pressure was 1. This was less painful at the point of entry but I had referred pain pretty much everywhere over my body (especially my groin, neck, shoulders and legs) and my right leg was going into spasms when he was digging around touching the nerves. Finally he managed to get the fluid which was coming out very slowly to start with but then started to speed up (thankfully) and the pressure increased to 24. The whole process took just over 30 minutes.

When it was done I was told that I might suffer a mild/moderate headache as the pressure had been low and to lie down for 1.5 hrs which I did. My husband then took me home - I was wobbly but could stand. A few hours later I was lying down on my bed and needed to use the bathroom. As soon as I raised my head an inch it felt like my brain was being forced through my neck and down my body. I actually thought my neck had been removed!! The pressure was unbelievable so I had to stay put. Five days later and no sign of it getting any better and two visits by a GP I was taking into hospital by ambulance. I was in for a week whilst they did various tests and during this time I was given a kidney infection from the catheta and had a reaction to the anti-biotics. I couldn't lie down, sit up or anything - I was hanging over the bed crying and begging the nurse to help me.

Eventually the pressure in my head started to go and I was allowed home. However, now I am back I am suffering from lower back pain, worse pain in my right arm, pain in both of my legs and I have superficial vein thrombosis in my right arm (which is getting worse) from the cannula that was in for 5 days (and only flushed twice).

I am due to go back to work next week after being on maternity leave and have missed the last 3 weeks of being with my son before he started nursery because I've been through all of the above.

I am thinking of complaining to the hospital and wondered if anybody had any useful information that I should be thinking about whilst I pen my letter of complain? In particular, is it normal procedure to carry out a lumbar puncture without a local anesthetic?

Any advice would be very, very much welcome.

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